“The experience has changed my attitude. I’m more confident in joining in with things that are new and daunting”
Charlotte Prince explores the work of the Teenage Cancer Trust, and talks to students balancing university life with cancer treatment.
University is meant to be the highlight of your life. For the first time, you have unlimited freedom as you move away from home and find yourself in the middle of one of the most exciting student cities in the world. The world is your oyster! To some people, it might seem ridiculous that people go to university without that promise of freedom and independence. Yet with so many people being affected by such a common disease, it’s not that strange that people decide to get their degree no matter what.
Teenage Cancer Trust (TCT)’s vision is a future in which young people’s lives don’t stop because they have cancer. They make sure they are treated as young people first, cancer patients second and everything they do aims to improve their quality of life and chances of survival.
The TCT was created as a charity to support patients who were too old to be classed as paediatrics and too young to be treated the same as the adult patients. They help to cater for the emotional, physical, and practical needs of patients from the age of 13 to 24. They provide patients with modern and homely wards, activities to keep them distracted, and the chance to get to know people of the same age in a similar situation. St. James’ hospital in Leeds has a TCT ward with an equipped study room that gives patients access to facilities to continue with their studies, despite being in hospital. This is a quiet space with two computers, a couch, and many books, where students are able to have some time alone to catch up on much-needed work. They also have up-to-date laptops with every bed, meaning that even bedridden patients have the opportunity to keep on top of their work… and Facebook. Normally only NHS staff have access to an internet connection in hospital, but TCT has installed and paid for Sky TV and broadband throughout all of their wards.
TCT ward co-ordinators play a vital role in supporting young people to cope with the difficulties of living with the effects of cancer. They help patients to manage with exams and revision stress, as well as giving them the opportunity to access key skills and experiences that they may have missed out on while receiving treatment.
St. James’ TCT ward works closely with the Emma Malty Memorial Fund to make sure that patients have as much educational support as possible.
Karen Thomas is St. James’ Hospital Specialist Learning Mentor, working on behalf of the Emma Malty Memorial Fund. The charity exists to provide a service of learning mentors to cancer patients wanting to carry on studying throughout their treatment. Karen’s role is to support any student who is coping with cancer as well as their studies, acting as a mediator between the student and the University. She understands the importance of making sure patients with life-changing illnesses are given the same opportunities as everybody else, telling Leeds Student that ‘Studying is stressful enough without having to worry about fighting cancer at the same time.
“Being given the opportunity to help young people carry on doing what they love whilst they’re undergoing difficult treatment really appealed to me as a way of giving people as fair a chance as possible to achieve everything they are capable of.”
Karen makes sure that deadlines are flexible for students who will struggle to perform to their best ability under normal deadline circumstances, as well as making sure exams are arranged to be as stress-free as possible. Karen admits that her role differs depending on who she is working with, stating “my role can be anything from acting as key point of contact between university or college, to being a careers advisor for patients who need a bit of help working out where they’re heading after treatment and how they can make the most out of their future.” She takes her job incredibly seriously, telling Leeds Student: “Every patient is different and I’ll always do everything I can to make sure that they have the opportunity to carry on with their course. Even if it involves picking up exam papers and invigilating exams myself at somebody’s bedside!”
The University of Leeds also provides services to support students undergoing treatment while studying. Their Equality Service is one of the largest university disability teams in the country. The service is there to help students suffering from all kinds of disabilities, including those who are deaf or hard of hearing, blind or partially-sighted, have specific learning difficulties including dyslexia or dyspraxia, physical disability, mobility difficulties, developmental learning or mental health conditions. They offer all kinds of support depending on the needs of each individual student. For example, they can provide support-workers to help students manage issues from domestic tasks to tackling the library, they can negotiate alternative exam arrangements, and they can also help with financial support such as Disability Student Allowance.
Alfie was diagnosed with Leukaemia in his second year of university. He described to Leeds Student the various emotions he went through when dealing with this, saying “I found the sudden change from being a full time student to a full time patient challenging, as I felt that I was falling out of the loop. I’m a music student, so a lot of the focus is on ensemble performance, working with others and building up a network of musicians to play with, which I felt I was missing out on. I also missed doing work! After a while I was gagging to be working on a project or anything to keep me occupied and take my mind off the gruelling treatment.”
When we asked Alfie how he managed to balance his education with his medical treatment, he told us, “It took some time to adjust it with my schedule, but it’s pretty balanced now. Any lessons I have to miss, I can email the tutors or access the info online.”
It goes without saying that when your life is affected by something as uncontrollable and foreign as cancer, it changes the way you live and your whole perspective on life. Alfie definitely felt this, especially when it came to how involved he got at university. He said “The experience has changed my attitude in that it has made me want to get involved with more activities. Before I might have been apprehensive about doing something, but now I just throw myself into it as I appreciate them in a different way. I’m more confident in joining in with things that are new and daunting.”
Alfie also said that he wouldn’t have got this far in his education if it hadn’t been for the amazing support of Teenage Cancer Trust, saying, “They understand how to juggle illness with school work or university. It also allowed me to meet and talk with people in a similar situation, which I found invaluable when dealing with cancer.”
Despite the fact that Alex completed his studies with Neurofibromatosis, peripheral nerve sheath tumour, he still got a first for his dissertation. One time Alex had to stay in bed due to being unable to walk and often found that he had to attend hospital appointments over lectures. This meant that mitigating circumstances and assignment deadline extensions were vital for him being able to keep on top of his workload.
He also faced difficulties amongst his peers, telling Leeds Student: “I had to tell my project group that sometimes I just did not want to go to uni if I had a scan in the morning or an appointment. I just didn’t want to talk about it. I suppose it was crucial to talk about it so people knew what I was going through.” Despite all the difficulties of juggling a long-term illness with university, he still managed to graduate with fantastic results.
Alex is highly aware of the importance of support from university when trying to complete a degree. He said, “When writing a dissertation, it’s so important to be focused. But when the word ‘cancer’ is on your mind, you just don’t know what to think. Having that drive to focus on your university work is so crucial, but sometimes it was hard to find.”
Words: Charlotte Prince
Image: Joanna Keen